South Korean Patients Protest for Neuromyelitis Optica Drug Access

Patients with neuromyelitis optica gathered in Seoul to demand lower insurance coverage criteria for third-line treatments ^[1].

The protest highlights a critical gap in healthcare access where patients must suffer severe relapses before qualifying for government-funded medication. Because the condition can lead to permanent blindness or paralysis, delaying treatment until a patient is severely ill increases the risk of irreversible disability.

The Neuromyelitis Optica Patient Association organized the demonstration in front of the Health Insurance Review and Assessment Service [1, 2]. The group said the current insurance standards are too restrictive, effectively requiring patients to be in a devastated state before they can access necessary care.

Financial barriers are a primary driver of the protest. The cost of third-line treatments can reach hundreds of millions of won ^[1], making them inaccessible to those without insurance coverage. Current regulations often only grant coverage after a patient has experienced multiple relapses ^[2].

This requirement is particularly dangerous given the nature of the disease. According to data provided by the association, the relapse experience rate for patients is 90% ^[1]. Each relapse risks further damaging the optic nerves or spinal cord, yet the insurance system requires these events to occur before providing financial aid.

Patients said they are fighting to prevent avoidable disability. They are calling for the government to adjust the insurance criteria so that patients can receive third-line therapy before permanent damage occurs [1, 2].